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Karri
@karri

Posts: 5
Joined: Aug 04, 2011

My chronic pain all started 4/11/06

Posted by @karri, Jul 31, 2015

My chroic pain all started 4/11/06. I had a hysterectomy by Lapsurgery. I woke up an instantly had pain in my right groin. I went back to surgeon so many times. 5/19/06 Cystectomy, I only had one remaining ovary so we wanetd to tryto save it. Still had the same pain so on 6/10/06 ANOTHER SURGERY.Removal of ovary. Still had pain. UGH. Tried acupuncture,meds etc. Finally 3/07 I REFERED MYSELF to a pain clinic where they diagnosed me with ILIOINGUINAL NEURALGIA. It has been one hell of a ride. My health has declined ever since 4/06. So many things keep happening to me. Anyway, I have tried quite a few things over the years. Still have the pain. Gabapentin, Topamax, Tramadol, Percocet, Vicoden, Voltaren Gel, Lodocaine salve AND patches, TENS UNIT, etc. If I looked back at my records I would probably come up with more. Anyway, Neurologist I found through the MinnesotaNeuropathyAssociation was great.He worked really hard at trying to find which nerve was really causing the pain. The pain from my groin eventually went all the way down my leg. Lower leg, thigh and groin. Neuro came up with femoral nerve compresson. He finally referred me to the Mayo. After some testing, Dr. R. J. Spinner did a Femoral Decompression surgery for my lower leg. At the time, he said he could do one of the 3, I chose my lower leg since that was the worst. That surgery was 1/16/13. 2 1/2 years. Now I am wanting to work on my groin pain. Had a Ilioinguinal nerve block today. Feels like it made the pain better. My groin pain gets worse from pushing, law mowing, lifting, standing more than 30 minutes. I do attend a pain clinic. After my surgery at Mayo, things were going so well, I actually graduated from the pain clinic. Well, it slowly seemedto start getting worse around the middle of May 2015 so I went back to same clinic. Was there 2 weeks ago, di urine drug test, nerve block started back on Naproxen, go back 8/3. I guess this is my story. Any thoughts? Anything that worked for you that maybe I have not tried? HELP.

REPLY

Hi Karri, thank you so much for all the updates you have posted. Here is my history… In June, 2012, I had a c-section after 27 hr labor. After surgery, I was having burning pain on my abdomen surrounding scar, and slightly into groin. After attempting gabapentin, I was referred to Deniz Zolnoun at UNC (luckily, I had delivered at UNC and was going there for help after I developed a hematoma and the midwives I had seen at the birthing center, then UNC OB/GYNs could no longer help). She has been amazing in helping to try everything (maybe nothing you haven’t tried already though). Anyway, I have been on Cymbalta, Gabapentin, and Propanolol for about close to 3 years). Overall, she shrunk the area of the pain to very small area near the scar. I’ve also had Lidocain patches, topical lidocain, nerve blocks, etc. I haven’t worn much with waistebands and try to avoid underwear – that actually has helped in my case. Difficult to find professional-looking long dresses. she collaborated with Dr. Dominika James in the pain clinic at UNC. I have now had 2 injections of steroid mixed with numbing med in the ilioinguinal nerve – the first gave me relief for 6 weeks! No pain for 6 weeks!!! Well, it did return, so went again for 2nd and got relief, but less relief and it returned sooner. Up next, she will try RF Ablation. I am weaning off of Cymbalta now, tried to wean off of propanolol, but pain got worse, so went back on. My priority is to get off of Cymbalta, but hopefully the others because I want to try and have another baby. So, I will certainly let you know how RF works for me and keep you posted. I would suggest looking into the doctors I listed above – Zolnoun specializes specifically in pelvic pain, if you are inclined. As luck would have it, my daughter stepped on my troublesome nerve (I think) yesterday while we were playing, and now I have an increase in pain lower towards groin than usual. I definitely seem to have a smaller overall area than you, and I sincerely hope you are able to get relief soon!

Here are some other things we’ve tried, that may or may not offer some ideas. If you’re like me, I don’t care… I’ll try anything that has a glimmer of possibility!

– Tiger Balm (good for temp relief)
– Magnesium (I think this is supposed to decrease inflammation)
– Acupuncture (definitely highlighted the lack of chi to affected area, but overall I didn’t see marked difference)
– Topical cream from compounding pharmacy – includes ketamine plus other (after a couple weeks, I am thinking it isn’t having much more impact than tiger balm)
– EPA Fish Oil
– Hypericum Oil (topical, from acupuncturist, similar affect as tiger balm)

All the best and would love to hear how you are doing.

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